FAQs
Helpful answers to common questions
Information about participating in these studies.
How does the "DCC Infant Study" differ from the "DCC Child Study"?
The DCC Infant Study
- requires enrollment before 15 months of age
- compensates participants
- includes remote testing timepoints at 6,12, 18, 24 & 36 months
- may include invitation for in-person assessment in Minnesota
The DCC Child Study
- allows enrollment at any age from 15 months through 17 years
- no participant compensation
- includes remote testing timepoints at 18, 24 & 36 months, and annually until age 1
Research Basics
What is a research study?
What is informed consent?
Signing / completing the informed consent form is NOT like signing a contract; you can leave the study at any time, for any reason. You are also encouraged to ask questions at any time throughout the study.
Study Participation
What is the goal of the DCC Infant and Child Studies?
The purpose of these studies is to better understand development in children with dysgenesis or agenesis of the corpus callosum. Improved understanding of development over this period will improve clinical recommendations and treatment planning in the future.
Who can participate in these studies?
Parents / primary caregivers of a child diagnosed with agenesis, dysgenesis or hypoplasia of the corpus callosum via MRI, CT, or ultrasound and who is either less than 18 years of age. Caregivers must be 18 years or older and must be proficient in reading and speaking English.
What do these studies involve?
Participation in the DCC Infant Study and the DCC Infant & Child Study involves completing several hours of online questionnaires regarding your child’s medical history and behavior, as well as your own behavior and family context. You may also be asked to complete an interview by phone or internet regarding your child’s current behaviors.
For both studies you will be asked to complete these questionnaires on up to five occasions by the child’s 3rd birthday. For the DCC Infant & Child Study you will also be asked to complete these questionnaires one time a year from ages 4 through 17.
For both studies, you will be asked to submit copies of your child’s brain scans (MRI, CT, or ultrasound) and radiology reports, which will be used solely to confirm the corpus callosum diagnosis required for study participation.
You may be mailed a kit to contribute salivary samples for future extraction of salivary DNA. These samples will be stored by the Caltech team.
Some families enrolled in the DCC Infant Study will be asked to participate in an additional phase of this research that includes visiting the University of Minnesota for an in-person developmental assessment. Travel expenses will be covered.
Who will see my data from this study?
How much time will it take?
Caregivers will participate on up to 5 occasions when their child is between 6 and 36 months of age (around the ages of 6, 12, 18, 24, and 30/36 months). For the DCC Child Study, caregivers will also participate once a year from ages 4 up to 18.
At each visit, caregivers will complete questionnaires online (~2-3 hours) and may participate in phone-based interviews (~1-2 hours), which could take ~4-5 total hours per visit.
What if I miss one of the testing time-points?
If you miss one time-point, you can simply continue the study at the next time-point.
What if I change my mind part way through the study?
What if I don’t qualify for this study?
If you do not qualify for either of these studies, but have completed the online consent to participate and provided your contact information with permission to contact you regarding future studies, we will keep this basic demographic information about your family and may inform future studies of both current and future study opportunities related to DCC.
Will I receive research test results?
While we will be happy to talk to you about the scientific findings of our work, we will not be able to give you any clinical feedback. This means we cannot tell you how you or your child compares to other people/children on any of the measures. Most tests done on samples in research studies are only for research and have no clear meaning for health care.
What happens if I agree to participate, but I change my mind later?
If you first agree to participate and then you change your mind, you are free to withdraw your consent and discontinue your participation at any time. To withdraw from this study, you only need to let the experimenter or the principal investigator know. You can do this by calling them on the phone or by email. You will not be asked to explain your reasons. You may also ask to have your data removed from the study. You will not be asked to explain your reasons. Drs. Paul or Elison will contact you to confirm receipt and fulfillment of your request.
Risk & Benefits
How will this study help people with DCC?
This understanding can be used to create more effective intervention techniques and supports for children and adults with DCC.
What are the risks of participating?
Will it cost me anything to participate?
Will I be compensated for my participation?
DCC Infant & Child Study: This is a pilot study and is currently unfunded. Thus, participants will not receive compensation.